CF in the time of coronavirus
Updated: Mar 21, 2020
Initially, this blog was intended to share my stories of bouncing back from recurrent illness. And then, Covid-19 tore through our world and our lives. This new normal for many has been a long-time normal for those of us with Cystic Fibrosis.
I can maneuver through an airport without touching a single surface with my bare skin. I consider this a super power that took some time to develop. It is also a skill fueled by my fear of people’s colds and flus that they ignore to travel for vacations and/or work. All this before the coronavirus.
This is the war I’ve been training for.
I have Cystic Fibrosis, a genetic chronic/terminal illness. A rare disease affecting 30,000 people in the US. For many of us, a dis-ease that turns our mucus into silly-putty and therefore affects our lungs, sinuses, pancreas, and reproductive organs. For me, just my lungs. I have a mild form and was not diagnosed until I was 25 years old. I am lucky.
For perspective, lucky in CF means I’ve been hospitalized more than thirty times in the past twenty years. My mental health has always been affected, but is only recently part of my awareness. Not by choice. Lucky also means I have a daughter. I travel extensively. I have a full-time job. I have insurance. I don’t fight to keep weight on my body.
With CF, our lungs are colonized by several bacteria and while our coughs are rather discomforting to others, the only people we are usually contagious to is one another. For this reason, we are experts in social distancing. Our conferences are online - we are experts in virtual conferences. And, because of the risk we present to one another and because many of you cannot be trusted to cover your coughs or sneezes in public, we are experts in wearing masks.
So, the Coronavirus is the war we’ve been preparing for.
We are experts in struggle and survival. Our families and caregivers live in a world of uncertainty. And joy. And the understanding that none of this living-stuff can be taken for granted.
I didn't want to talk about CF for a long, long time. Until now. Because recently I realized that acknowledging CF in my body is also acknowledging my story of resilience. Resilience taught by healing over and over again.
This is what we will need moving forward. Resilience. I hope that this blog can provide insights into what that means told from one rare disease patient. It's probably never been more relevant.